About Me

ACHA National Conference
June 2017

Thanks for checking me out. My name is Ken Woodhouse, and I was born in 1981 with a congenital heart defect (CHD) known as tetralogy of Fallot. I had my first open heart surgery at the age of eight months; and like many individuals with CHD, I originally thought I was “fixed” after that surgery. I never really considered myself a heart patient when I was younger, and I fell out of cardiology care for over a decade between my mid-teens and late 20s.

I am extremely fortunate that I have been able to live a healthy and active life; and I have always loved the outdoors, cycling in particular. In 2005, as part of a fundraising event for my then-employer, I took my love of casual riding to the next level by participating in my first endurance challenge: a 2-day, 180-mile ride from Evanston, Illinois, to Lake Geneva, Wisconsin, and back. I became hooked! Since then, I have continued to pursue my love for endurance cycling by participating in a variety of distance rides across the United States and one in Canada.

A bicycling accident in August 2011 resulted in a concussion and a trip to the emergency room. While I was not seriously injured, a series of follow-up tests revealed that I had an aneurysm in my pulmonary artery; and the reality quickly set in that my CHD was not fixed. In fact, I would need additional intervention in the not-too-distant future and specialized care for the rest of my life.

British Columbia, Canada
July 2015
Shortly after that accident, I became active in the congenital heart defect/disease community. As an advocate and speaker, I have had the opportunity to share my own story and to help raise awareness on Capitol Hill and at events across the country. I am currently a Senior Ambassador, blogger, and the Advocacy Affinity Group Leader with the Adult Congenital Heart Association and a member of the Congenital Heart Public Health Consortium. My volunteer work in the CHD community has also given me the chance to collaborate with The Children’s Heart Foundation and the Pediatric Congenital Heart Association.

In January 2014, I had my second open heart surgery to replace my original pulmonary valve, which had been leaking since birth, and to remove the aneurysm that was discovered just over two years prior. I ran a 5K race 108 days later and clocked my personal best time to date. 

I am determined to not let my CHD keep me from living an active life, and I am admittedly a bit of an endurance event enthusiast. From time to time, I even venture off the bike seat for new challenges. In 2012, I completed the Chicago Half Marathon, my first-ever running endurance event; and in 2016, I hiked the Camino de Santiago from Saint-Jean-Pied-de-Port, France to Santiago de Compostela, Spain—500 miles over 31 days.

Everyone’s journey is unique, whether or not they have a chronic health condition. I created this blog as a way to document my own story and my own path. In 2017, I became a contributor to The Mighty, and I look forward to sharing even more stories as a way to continue spreading awareness for congenital heart disease, the #1 birth defect.